Jump to content


Photo

Diagnosis/frustration


  • Please log in to reply
9 replies to this topic

#1 countingsheep

countingsheep

    Member

  • Members
  • 4 posts

Posted 13 November 2012 - 03:41 PM

Hello,

I was recently diagnosed with idiopathic hypersomnia after having a very difficult sleep study at a sleep lab. I am 32 years old and have dealt with excessive sleepiness since high school and night terrors, sleep paralysis, and hallucinations since childhood. I sought out treatment recently because the hallucinations upon falling asleep began to happen nightly, I could not stay awake during the day, and I was getting out of bed more and more frequently in my sleep.

Given that I've been dealing with this for so long, I've grown terrified of other people seeing me in such a crazy state while I sleep. So, when I sleep somewhere other than home, I always sleep "lighter" than normal if that makes sense and this happened in the sleep lab. It was very difficult for me to fall asleep and once I did, it was very light sleep and I woke up many times throughout the night.

My MSLT results averaged 6min or less to fall asleep, I fell asleep for each nap, and in some naps I was asleep in 2-3 minutes.

Of course, none of my usual behaviors happened in the sleep lab and since my sleep was so disrupted, they diagnosed idiopathic hypersomnia. My sleep specialist says she thinks I have narcolepsy but the study itself didn't show that.

So I bring you my frustration in hopes of getting some guidance. For years I have been able to track going to sleep and having a hallucination within 5 minutes of closing my eyes. I've seen things and heard things. I've shrieked out in terror at night, gotten out of bed, ran across the house, hurt myself acting out my dream (twisted ankles, etc). During the day, I've been so tired and so mentally fogged that I cannot see straight. I fell asleep at work. During a job interview it took all of my being to stay awake. Times when I should have adrenaline pumping through me I cannot even focus.

My only other medical condition is Hashimoto's thyroiditis and I've blamed my poor thyroid for years for the way I feel. No amount of medication adjustments ever helped and even when my thyroid levels were in normal range, I still felt so tired and the nighttime behaviors persisted.

So now I am on clonazepam at night to address the behaviors and Provigil during the day. Amazingly, even with clonazepam I am still doing things in my sleep except now, frighteningly, I do not wake up at all. The Provigil has made some difference in the daytime sleepiness but there are still days where I feel like I am going to fall asleep at any moment. It's only been 2 weeks that I've been on the medicine so I am giving things time.

My questions for all of you - does a clinical narcolepsy diagnosis matter in terms of treatment? My doctor thinks I have narcolepsy based on reported symptoms but the chart reads idiopathic hypersomnia based on the clinical results. She said she may repeat the sleep study in a year to see but will it matter?

I feel a sense of relief in having affirmation that I do have a sleep disorder but also frustrated that I was not able to sleep as I usually do when I was in the lab. It shouldn't matter because of course I know that there is a problem and my bed partner can certainly attest to all the things that go on at night but for some reason, it gnaws at me that it wasn't captured in the lab.

Is it normal to still be tired with Provigil? I am on a 100mg dose 1x daily in the morning.

Any thoughts you have would be greatly appreciated. I am so tired of feeling so tired and am always so afraid of what I am going to do at night. I feel such a sense of loss in terms of all the years that I turned down opportunities to do things in the name of sleepiness and trying to get enough sleep to not be so tired only to now realize that I could have slept forever and it wouldn't have mattered.

Many thanks in advance!

#2 Hank

Hank

    Member

  • Members
  • 1,597 posts
  • Gender:Male

Posted 13 November 2012 - 06:44 PM

Hello,

I was recently diagnosed with idiopathic hypersomnia after having a very difficult sleep study at a sleep lab. I am 32 years old and have dealt with excessive sleepiness since high school and night terrors, sleep paralysis, and hallucinations since childhood. I sought out treatment recently because the hallucinations upon falling asleep began to happen nightly, I could not stay awake during the day, and I was getting out of bed more and more frequently in my sleep.

Given that I've been dealing with this for so long, I've grown terrified of other people seeing me in such a crazy state while I sleep. So, when I sleep somewhere other than home, I always sleep "lighter" than normal if that makes sense and this happened in the sleep lab. It was very difficult for me to fall asleep and once I did, it was very light sleep and I woke up many times throughout the night.

My MSLT results averaged 6min or less to fall asleep, I fell asleep for each nap, and in some naps I was asleep in 2-3 minutes.

Of course, none of my usual behaviors happened in the sleep lab and since my sleep was so disrupted, they diagnosed idiopathic hypersomnia. My sleep specialist says she thinks I have narcolepsy but the study itself didn't show that.

So I bring you my frustration in hopes of getting some guidance. For years I have been able to track going to sleep and having a hallucination within 5 minutes of closing my eyes. I've seen things and heard things. I've shrieked out in terror at night, gotten out of bed, ran across the house, hurt myself acting out my dream (twisted ankles, etc). During the day, I've been so tired and so mentally fogged that I cannot see straight. I fell asleep at work. During a job interview it took all of my being to stay awake. Times when I should have adrenaline pumping through me I cannot even focus.

My only other medical condition is Hashimoto's thyroiditis and I've blamed my poor thyroid for years for the way I feel. No amount of medication adjustments ever helped and even when my thyroid levels were in normal range, I still felt so tired and the nighttime behaviors persisted.

So now I am on clonazepam at night to address the behaviors and Provigil during the day. Amazingly, even with clonazepam I am still doing things in my sleep except now, frighteningly, I do not wake up at all. The Provigil has made some difference in the daytime sleepiness but there are still days where I feel like I am going to fall asleep at any moment. It's only been 2 weeks that I've been on the medicine so I am giving things time.

My questions for all of you - does a clinical narcolepsy diagnosis matter in terms of treatment? My doctor thinks I have narcolepsy based on reported symptoms but the chart reads idiopathic hypersomnia based on the clinical results. She said she may repeat the sleep study in a year to see but will it matter?

I feel a sense of relief in having affirmation that I do have a sleep disorder but also frustrated that I was not able to sleep as I usually do when I was in the lab. It shouldn't matter because of course I know that there is a problem and my bed partner can certainly attest to all the things that go on at night but for some reason, it gnaws at me that it wasn't captured in the lab.

Is it normal to still be tired with Provigil? I am on a 100mg dose 1x daily in the morning.

Any thoughts you have would be greatly appreciated. I am so tired of feeling so tired and am always so afraid of what I am going to do at night. I feel such a sense of loss in terms of all the years that I turned down opportunities to do things in the name of sleepiness and trying to get enough sleep to not be so tired only to now realize that I could have slept forever and it wouldn't have mattered.

Many thanks in advance!


Ok- you are still in the thick of it without any clear cut answers that explain it all. I have a few questions for you:
1. Is your doctor a specialist in Sleep Medicine (like a Neurologist who is fellowship trained in sleep medicine)?
2. Is this doctor the same doctor who prescribed Clonazepam? and is this the same doctor who ordered the MSLT?
3. Did anyone explain to you that Clonazepam disrupts sleep architecture by supressing REM sleep and decreasing stage 3 sleep? The results of a PSG and MSLT are not valid while on Clonazepam for this reason.
4. How long have you been on Clonazepam, what dose, and how often?

I had been incorrectly diagnosed and treated with Clonazepam. When I finally changed to a Sleep Medicine specialist, I had to begin a slow taper off Clonazepam.
My first PSG/MSLT was 2 months into that tapering and showed no Sleep Onset REM, which is required for a Narcolepsy diagnosis.
My second PSG/MSLT was one month after I was completely off Clonazepam. I had 2 SOREM and was diagnosed with Narcolepsy/Cataplexy. My description of Cataplexy was not taken seriously until the evidence of Narcolepsy was solid.

My current Sleep Medicine Specialist said she would never use Clonazepam. If the same doctor who prescribe Clonazepam is doing your sleep studies, I suggest starting over with a new doctor.

If/when you begin your slow taper off Clonazepam, I suggest this resource: The Ashton Manual and http://recovery-road.org/

Please review this website thoroughly before starting your taper. Please make sure whoever is monitoring your withdrawal fully understands how to get someone off a Benzodiazapine, like Clonazepam. From my unfortunate experience, doctors who put people on Benzo's do not know how to get people off them. And doctors who do not prescribe Benzo's do not know how to get people off them. It can be done- I did it- but it must be slowly and well managed to avoid what I experienced.

#3 Ciraeyna

Ciraeyna

    Member

  • Members
  • 13 posts
  • Gender:Female
  • Interests:married, Mom of 3, research scientist, WoW addict, newly diagnosed with N+C after >20 years

Posted 13 November 2012 - 10:30 PM

Hi countingsheep,

To answer your main question "Does the narcolepsy vs. IH diagnosis really matter?" - my understanding from lots of Googling is that it doesn't really matter since the same meds are mostly used to treat both...with the important exception of Xyrem. Xyrem can only legally be prescribed for people with the official "narcolepsy" diagnosis. You can perhaps find a doc who will prescribe off-label, but this stuff is so highly regulated that I don't know how often that happens.

I have struggled with my own diagnosis, because I'm not certain whether I actually have narcolepsy or IH. I have features of both, although I think I'm gradually accepting that it seems more like narcolepsy because of all the REM features. I have always slept really hard and really long. Waking up during the night doesn't happen often, and when it does I am a complete basket case the next day. Since many (most?) PWN seem to wake a lot, I wasn't sure about that part. Some experts in the field have started classifying different kinds of narcolepsy, and I sound more like those in the subset with the oh-so-clever name "narcolepsy with long sleep" (or something like that).

I am fortunate to have a doctor who diagnoses his patients more off their symptoms and history than the sleep study results. I say this was fortunate for me because my sleep study was a disaster. Like you, I slept nothing like how I normally sleep - neither at night nor in my naps. My MSLT results averaged 7 min, but I knew I wasn't really asleep in any of them. Not what I consider asleep. And sure enough, I didn't hit REM in any of them. The only time I hit REM during the entire experience was once towards the beginning of the morning, and that was the only time I subjectively reported that I'd been asleep. I believe it was DeathRabbit who said elsewhere in this forum that anxiety suppresses REM. That I can believe. The pressure of being in a "test" and hoping to have someone finally find the answer for all my issues was something I couldn't shake. If you are interested, here's a link to how my PSG during the sleep study looked compared to my own baseline reading taken at home via Zeo: http://i1290.photobu...GvsBaseline.png Clearly, sleep studies are not AT ALL helpful in some cases. (With that said, I encourage everyone to have one if they suspect a sleep disorder. You gotta start somewhere, and maybe I am more the exception than the rule.)

Like your doctor, I would be inclined to think you have narcolepsy along with RBD (REM sleep behavior disorder) given that you are acting out your dreams. However, it doesn't necessarily matter what they call it unless you want to try Xyrem. I'd probably push to get the "right" diagnosis. It took me 20 years to finally get mine. I've been diagnosed as depressed multiple times (and took 3 different antidepressants which did squat every time), I've been told I'm stressed and should just take a vacation, I've been told I need to sleep more, exercise, eat right, lose weight, etc. Not one stinkin' doctor over those 20 years ever asked me about my sleep. And I never really realized until a few months ago that sleep might actually be the answer. Once I hit upon that and found a good sleep doc, it took about 2 months to get the answer I've been seeking for 20 years. My advice to you is just don't give up if you feel there is more going on than your doc is acknowledging. (Sorry for the personal rant, it gets my goat every time I think about how many of us are misdiagnosed for so long.)

I found your thyroid reference pretty interesting, because one of the things I've pursued heavily over the last 10 years was my thyroid function. I have had symptoms of hypothyroidism for at least that long, and I was bound and determined that it was the root of my problems. I saw different doctors and had bloodwork done about 10 times in the past 6 years, and every single time my thyroid tests came back in the normal range. But my symptoms continued, worsened even, and I got more and more frustrated as docs kept saying nothing was wrong with me. Now for the interesting part - I started Xyrem almost 2 months ago when I finally got the narcolepsy diagnosis. Within 2 weeks, I noticed a significant improvement in my "hypothyroid" symptoms. I wasn't cold inside my bones anymore. I wasn't constipated anymore (TMI, sorry). My cycle was more normal (more TMI but not as graphic as I could be :P). My hands and feet don't hurt because they are so cold. My cuts are healing faster (did you know a small cut on your finger doesn't actually need a month to heal?). There's probably more, but I can't think of it all right now. It has been amazing, and it's reaffirmed what I've known for years - my body has been in slow motion, functioning but certainly not like it should. I feel like the deep sleep I'm getting on Xyrem has finally woken up my body, presumably because of the additional GH secretion that I'd been missing out on.

I have not read anywhere else where people reported physical improvements like this, but I'm really curious if you would see your hypothyroid symptoms reduced if you tried Xyrem. I'm also curious if any others on this forum have noticed anything like that.

I think you are on the right track with Provigil - or the newer one Nuvigil - or any other stimulant that may work best for you with the fewest side effects. But I'd also pursue the narcolepsy diagnosis so you'll have the Xyrem option someday if you want to try it. I'd also echo Hank's comments about meds interfering with your sleep study. I also think we all can't stress enough the importance of finding a really good sleep doc who knows what they are doing.

Dealing emotionally with the tiredness, missed opportunities, frustration, anger, guilt, hopelessness, etc. that comes along with a sleep disorder is maybe harder than finding meds to stay awake. Keep the faith - you can feel better than you do now. It just takes time, trial and error, and LOTS of patience and persistence.

#4 countingsheep

countingsheep

    Member

  • Members
  • 4 posts

Posted 14 November 2012 - 09:49 AM

Thanks everyone for your kind replies.

Regarding the medications - I only started taking the clonazepam and Provigil after the sleep study, not before. I was only on my thyroid meds during the sleep study so that did not interfere with the test. What DID interfere with the test was being hooked up to so many monitors, feeling incredibly anxious about wanting to "do it right" so that they would see what I've been suffering with, and also - the bed was terribly uncomfortable (it actually had a dent in the middle!).

How did you get a baseline sleep study reading at home? I wish I could somehow be monitored at home because then I know for sure it would catch what is happening. Even with the clonazepam (.5mg) I still am experiencing hallucinations after only a few minutes of being asleep.

The doctor who ordered the sleep study and who is prescribing the medications is a sleep specialist (board certified in neurology and sleep medicine).

The frustrating thing for me is that from everything I read about narcolepsy, I completely identify with it and have had symptoms for a very long time. And to have the dr even say that it sounds like narcolepsy to her but since the sleep study didn't confirm it, then that isn't the diagnosis - it's very frustrating.

I don't know what to do. I've only been on clonazepam and Provigil for about 2 weeks and I still don't feel really better. When I first took Provigil on day 1 I had some chest pains but they went away by the second day. And for about a week I really did feel more alert during the day but the past few days have been back to the same feeling of mental fogginess, tiredness, and the irresistible urge to close my eyes and go to sleep.

In terms of Xyrem, I've read miraculous stories about how patients lives have entirely changed on that med but I get the strong sense that my doctor will only prescribe it with a clinical narcolepsy diagnosis. So, if I don't have another sleep study for a year, and if the next one is in the same lab with the same issues and I still don't sleep well, I'll have spent another year fighting to stay awake and still be in the same place I am now.

This has completely turned my life upside down. I am only 32 and I see my friends and colleagues who are the same age and they all have so much more energy than I do, don't spend the whole day yawning, don't lay their head on their desk at 9:00am, don't turn down opportunities to do things after work because they are so tired. I go to bed as early as I can, 8:30/9pm just to make sure I get enough sleep but it is all for naught.

How should I proceed?

Thank you again for your help and words of wisdom. It means so much.



Hi countingsheep,

To answer your main question "Does the narcolepsy vs. IH diagnosis really matter?" - my understanding from lots of Googling is that it doesn't really matter since the same meds are mostly used to treat both...with the important exception of Xyrem. Xyrem can only legally be prescribed for people with the official "narcolepsy" diagnosis. You can perhaps find a doc who will prescribe off-label, but this stuff is so highly regulated that I don't know how often that happens.

I have struggled with my own diagnosis, because I'm not certain whether I actually have narcolepsy or IH. I have features of both, although I think I'm gradually accepting that it seems more like narcolepsy because of all the REM features. I have always slept really hard and really long. Waking up during the night doesn't happen often, and when it does I am a complete basket case the next day. Since many (most?) PWN seem to wake a lot, I wasn't sure about that part. Some experts in the field have started classifying different kinds of narcolepsy, and I sound more like those in the subset with the oh-so-clever name "narcolepsy with long sleep" (or something like that).

I am fortunate to have a doctor who diagnoses his patients more off their symptoms and history than the sleep study results. I say this was fortunate for me because my sleep study was a disaster. Like you, I slept nothing like how I normally sleep - neither at night nor in my naps. My MSLT results averaged 7 min, but I knew I wasn't really asleep in any of them. Not what I consider asleep. And sure enough, I didn't hit REM in any of them. The only time I hit REM during the entire experience was once towards the beginning of the morning, and that was the only time I subjectively reported that I'd been asleep. I believe it was DeathRabbit who said elsewhere in this forum that anxiety suppresses REM. That I can believe. The pressure of being in a "test" and hoping to have someone finally find the answer for all my issues was something I couldn't shake. If you are interested, here's a link to how my PSG during the sleep study looked compared to my own baseline reading taken at home via Zeo: http://i1290.photobu...GvsBaseline.png Clearly, sleep studies are not AT ALL helpful in some cases. (With that said, I encourage everyone to have one if they suspect a sleep disorder. You gotta start somewhere, and maybe I am more the exception than the rule.)

Like your doctor, I would be inclined to think you have narcolepsy along with RBD (REM sleep behavior disorder) given that you are acting out your dreams. However, it doesn't necessarily matter what they call it unless you want to try Xyrem. I'd probably push to get the "right" diagnosis. It took me 20 years to finally get mine. I've been diagnosed as depressed multiple times (and took 3 different antidepressants which did squat every time), I've been told I'm stressed and should just take a vacation, I've been told I need to sleep more, exercise, eat right, lose weight, etc. Not one stinkin' doctor over those 20 years ever asked me about my sleep. And I never really realized until a few months ago that sleep might actually be the answer. Once I hit upon that and found a good sleep doc, it took about 2 months to get the answer I've been seeking for 20 years. My advice to you is just don't give up if you feel there is more going on than your doc is acknowledging. (Sorry for the personal rant, it gets my goat every time I think about how many of us are misdiagnosed for so long.)

I found your thyroid reference pretty interesting, because one of the things I've pursued heavily over the last 10 years was my thyroid function. I have had symptoms of hypothyroidism for at least that long, and I was bound and determined that it was the root of my problems. I saw different doctors and had bloodwork done about 10 times in the past 6 years, and every single time my thyroid tests came back in the normal range. But my symptoms continued, worsened even, and I got more and more frustrated as docs kept saying nothing was wrong with me. Now for the interesting part - I started Xyrem almost 2 months ago when I finally got the narcolepsy diagnosis. Within 2 weeks, I noticed a significant improvement in my "hypothyroid" symptoms. I wasn't cold inside my bones anymore. I wasn't constipated anymore (TMI, sorry). My cycle was more normal (more TMI but not as graphic as I could be :P). My hands and feet don't hurt because they are so cold. My cuts are healing faster (did you know a small cut on your finger doesn't actually need a month to heal?). There's probably more, but I can't think of it all right now. It has been amazing, and it's reaffirmed what I've known for years - my body has been in slow motion, functioning but certainly not like it should. I feel like the deep sleep I'm getting on Xyrem has finally woken up my body, presumably because of the additional GH secretion that I'd been missing out on.

I have not read anywhere else where people reported physical improvements like this, but I'm really curious if you would see your hypothyroid symptoms reduced if you tried Xyrem. I'm also curious if any others on this forum have noticed anything like that.

I think you are on the right track with Provigil - or the newer one Nuvigil - or any other stimulant that may work best for you with the fewest side effects. But I'd also pursue the narcolepsy diagnosis so you'll have the Xyrem option someday if you want to try it. I'd also echo Hank's comments about meds interfering with your sleep study. I also think we all can't stress enough the importance of finding a really good sleep doc who knows what they are doing.

Dealing emotionally with the tiredness, missed opportunities, frustration, anger, guilt, hopelessness, etc. that comes along with a sleep disorder is maybe harder than finding meds to stay awake. Keep the faith - you can feel better than you do now. It just takes time, trial and error, and LOTS of patience and persistence.



#5 Hank

Hank

    Member

  • Members
  • 1,597 posts
  • Gender:Male

Posted 14 November 2012 - 10:16 AM

Just a quick note. I am so glad you have only been on Clonazepam a short time. This medication is highly sedating with a long half life, so it sedates you all day long at the same level as it does at night. This was a cruel joke to me and it robbed me of so much. Clonazepam lengthens sleep but reduces the quality of it. It further reduces slow wave sleep and REM.

Dose withdrawal occurrs, so with time, you would need to continually increase your dose. I was eventually up to 1.5 mg. Withdrawal causes rebound insomnia and rebound REM. The severity of these rebounds is directly related to the length of time you are on it.

Clonazepam will never do more for you than it is right now. Also, if you ever have the opportunity to try Xyrem, you cannot take these 2 medications together.

Sorry to press the issue, but a Neurologist who is Board Certified in Sleep Medicine and a Neurologist who is fellowship trained in Sleep Medicine are very different.

Board Certification requires passing a test. Fellowship training is 1 or more years of specialized training, which makes them an expert.

Clonazepam is such a horrific medication. I am telling you what I desperately wish someone had told me.

Please consider this carefully- and seek a second opinion. Specialists in Sleep Medicine are very cautious about using a medication like Clonazepam because of its effects on sleep architecture. There are more effective medications for the purpose without the devastating effects. This is a medication prescribed by a physicians who are not thorough- those who are thorough do not prescribe these medications. This is a major red flag.

Please be very careful about the decisions you make about this medication. It has taken me 1 full year to taper and recover.



#6 countingsheep

countingsheep

    Member

  • Members
  • 4 posts

Posted 14 November 2012 - 10:57 AM

Thank you so much for your words of wisdom. I will take them very seriously.

I have noted that I am so groggy in the morning and I think the clonazepam is making the Provigil work less because I start off so groggy from the medication. I do NOT want to have additional problems because of the medication I am taking, I already have enough to deal with!

What kind of doctor should I seek out? I have good insurance and am closest to Ohio State University but there are a number of medical centers in the area.

Your thoughts are appreciated.

Many thanks!

Just a quick note. I am so glad you have only been on Clonazepam a short time. This medication is highly sedating with a long half life, so it sedates you all day long at the same level as it does at night. This was a cruel joke to me and it robbed me of so much. Clonazepam lengthens sleep but reduces the quality of it. It further reduces slow wave sleep and REM.

Dose withdrawal occurrs, so with time, you would need to continually increase your dose. I was eventually up to 1.5 mg. Withdrawal causes rebound insomnia and rebound REM. The severity of these rebounds is directly related to the length of time you are on it.

Clonazepam will never do more for you than it is right now. Also, if you ever have the opportunity to try Xyrem, you cannot take these 2 medications together.

Sorry to press the issue, but a Neurologist who is Board Certified in Sleep Medicine and a Neurologist who is fellowship trained in Sleep Medicine are very different.

Board Certification requires passing a test. Fellowship training is 1 or more years of specialized training, which makes them an expert.

Clonazepam is such a horrific medication. I am telling you what I desperately wish someone had told me.

Please consider this carefully- and seek a second opinion. Specialists in Sleep Medicine are very cautious about using a medication like Clonazepam because of its effects on sleep architecture. There are more effective medications for the purpose without the devastating effects. This is a medication prescribed by a physicians who are not thorough- those who are thorough do not prescribe these medications. This is a major red flag.

Please be very careful about the decisions you make about this medication. It has taken me 1 full year to taper and recover.




#7 countingsheep

countingsheep

    Member

  • Members
  • 4 posts

Posted 14 November 2012 - 10:58 AM

One more thing I forgot to mention - I also am chronically cold, to the point that I have zero tolerance for it. Even when it's in the 50s outside I have on a layer of long underwear! I also have chronically low blood pressure. I understand what you are saying about your body moving in slow motion - that is exactly how I feel.


Hi countingsheep,

To answer your main question "Does the narcolepsy vs. IH diagnosis really matter?" - my understanding from lots of Googling is that it doesn't really matter since the same meds are mostly used to treat both...with the important exception of Xyrem. Xyrem can only legally be prescribed for people with the official "narcolepsy" diagnosis. You can perhaps find a doc who will prescribe off-label, but this stuff is so highly regulated that I don't know how often that happens.

I have struggled with my own diagnosis, because I'm not certain whether I actually have narcolepsy or IH. I have features of both, although I think I'm gradually accepting that it seems more like narcolepsy because of all the REM features. I have always slept really hard and really long. Waking up during the night doesn't happen often, and when it does I am a complete basket case the next day. Since many (most?) PWN seem to wake a lot, I wasn't sure about that part. Some experts in the field have started classifying different kinds of narcolepsy, and I sound more like those in the subset with the oh-so-clever name "narcolepsy with long sleep" (or something like that).

I am fortunate to have a doctor who diagnoses his patients more off their symptoms and history than the sleep study results. I say this was fortunate for me because my sleep study was a disaster. Like you, I slept nothing like how I normally sleep - neither at night nor in my naps. My MSLT results averaged 7 min, but I knew I wasn't really asleep in any of them. Not what I consider asleep. And sure enough, I didn't hit REM in any of them. The only time I hit REM during the entire experience was once towards the beginning of the morning, and that was the only time I subjectively reported that I'd been asleep. I believe it was DeathRabbit who said elsewhere in this forum that anxiety suppresses REM. That I can believe. The pressure of being in a "test" and hoping to have someone finally find the answer for all my issues was something I couldn't shake. If you are interested, here's a link to how my PSG during the sleep study looked compared to my own baseline reading taken at home via Zeo: http://i1290.photobu...GvsBaseline.png Clearly, sleep studies are not AT ALL helpful in some cases. (With that said, I encourage everyone to have one if they suspect a sleep disorder. You gotta start somewhere, and maybe I am more the exception than the rule.)

Like your doctor, I would be inclined to think you have narcolepsy along with RBD (REM sleep behavior disorder) given that you are acting out your dreams. However, it doesn't necessarily matter what they call it unless you want to try Xyrem. I'd probably push to get the "right" diagnosis. It took me 20 years to finally get mine. I've been diagnosed as depressed multiple times (and took 3 different antidepressants which did squat every time), I've been told I'm stressed and should just take a vacation, I've been told I need to sleep more, exercise, eat right, lose weight, etc. Not one stinkin' doctor over those 20 years ever asked me about my sleep. And I never really realized until a few months ago that sleep might actually be the answer. Once I hit upon that and found a good sleep doc, it took about 2 months to get the answer I've been seeking for 20 years. My advice to you is just don't give up if you feel there is more going on than your doc is acknowledging. (Sorry for the personal rant, it gets my goat every time I think about how many of us are misdiagnosed for so long.)

I found your thyroid reference pretty interesting, because one of the things I've pursued heavily over the last 10 years was my thyroid function. I have had symptoms of hypothyroidism for at least that long, and I was bound and determined that it was the root of my problems. I saw different doctors and had bloodwork done about 10 times in the past 6 years, and every single time my thyroid tests came back in the normal range. But my symptoms continued, worsened even, and I got more and more frustrated as docs kept saying nothing was wrong with me. Now for the interesting part - I started Xyrem almost 2 months ago when I finally got the narcolepsy diagnosis. Within 2 weeks, I noticed a significant improvement in my "hypothyroid" symptoms. I wasn't cold inside my bones anymore. I wasn't constipated anymore (TMI, sorry). My cycle was more normal (more TMI but not as graphic as I could be :P). My hands and feet don't hurt because they are so cold. My cuts are healing faster (did you know a small cut on your finger doesn't actually need a month to heal?). There's probably more, but I can't think of it all right now. It has been amazing, and it's reaffirmed what I've known for years - my body has been in slow motion, functioning but certainly not like it should. I feel like the deep sleep I'm getting on Xyrem has finally woken up my body, presumably because of the additional GH secretion that I'd been missing out on.

I have not read anywhere else where people reported physical improvements like this, but I'm really curious if you would see your hypothyroid symptoms reduced if you tried Xyrem. I'm also curious if any others on this forum have noticed anything like that.

I think you are on the right track with Provigil - or the newer one Nuvigil - or any other stimulant that may work best for you with the fewest side effects. But I'd also pursue the narcolepsy diagnosis so you'll have the Xyrem option someday if you want to try it. I'd also echo Hank's comments about meds interfering with your sleep study. I also think we all can't stress enough the importance of finding a really good sleep doc who knows what they are doing.

Dealing emotionally with the tiredness, missed opportunities, frustration, anger, guilt, hopelessness, etc. that comes along with a sleep disorder is maybe harder than finding meds to stay awake. Keep the faith - you can feel better than you do now. It just takes time, trial and error, and LOTS of patience and persistence.



#8 Ciraeyna

Ciraeyna

    Member

  • Members
  • 13 posts
  • Gender:Female
  • Interests:married, Mom of 3, research scientist, WoW addict, newly diagnosed with N+C after >20 years

Posted 14 November 2012 - 10:02 PM

Hi countingsheep,

My baseline reading at home was done using a Zeo. It's a sleep tracking device that reads brainwaves via a headband that you wear all night. It's not as accurate as a PSG because it's only reading from the forehead, but I find that its close enough for my purposes. Some people think they are not accurate at all, some think they are pretty spot on - and I fall somewhere in the middle. It costs about $150, and then you have to buy replacement electrodes for the headband every 3 months. They have a website where you can upload your sleep data, and it automatically makes the nifty graphs and stuff.

For me, it does seem to get confused between "awake" and (I assume) "REM." Brain waves while you are awake are almost identical to those when you are in REM, and in the sleep lab they have additional electrodes that take various readings to help them differentiate between the two states. The Zeo is trying to do it all from your forehead, so I think sometimes it gets confused. Plus, it uses a computerized algorithm to assign sleep states whereas in a sleep lab there is a human technician who is reading the data. Regardless of that flaw, I believe it reads deep sleep pretty accurately and I like being able to see how much deep sleep I'm getting while I'm working out my Xyrem dose. So far, it seems to correlate pretty well with how I feel the next day. If I feel crappy, my Zeo graph is really a mess. On days I wake up feeling better, it seems to be less chaotic.

I got mine on Amazon, and there are tons of reviews (including many negative ones). You might want to check out what other users have said if you are interested.

I would encourage you to keep trying for the diagnosis you think is right. My doc says he has seen enough PWN to feel comfortable diagnosing it from symptoms...once everything else has been ruled out. This includes ruling out non-sleep related issues by doing a full blood workup (he did all kinds of crazy tests I'd never even heard of), and ruling out other sleep disorders such as apnea, restless leg, etc. (which is done from the overnight PSG). According to my blood work, I'm the healthiest woman alive so we ruled all that out. And even though my sleep study was awful, they gathered enough data to show zero apneas and no restless leg, etc. So mine was kind of a diagnosis of exclusion. I feel like we confirmed the diagnosis at my follow-up two weeks after starting Xyrem. The doc asked my husband how much I was improved on a scale of 1-10, and my husband enthusiastically answered "12!" :D

You may have to find a doc who is willing to diagnose off symptoms once everything else is ruled out. It sounds like your current doc is dead-set on having the MSLT show sleep onset <5 min and at least 2 SOREMP. :unsure:

If you are brave enough, I'd gather information and confront your doc - in a nice way, of course. They CAN do some kind of at-home sleep study because I was talking to my sleep technician about it. I think it involves the same wires and crap, but at least you'd be in your own bed. Maybe you can convince your doc to let you do an at-home study and not have to wait a whole year. If the sleep lab results are inconclusive, it seems to me it would be a reasonable thing to ask for something which may provide a definitive answer. I don't know how insurance comes into play here though...they might not pay for another one. There is also some kind of device you can wear on your wrist 24/7 which roughly tracks sleep by...movement I think. Here's more info on it, and it sounds like it could be an option (I have no idea how you get one though). http://en.wikipedia....wiki/Actigraphy

Hope something in that rambling post helps. he he
Cira

#9 Megssosleepy

Megssosleepy

    Member

  • Members
  • 433 posts
  • Gender:Female
  • Location:DreamLand USA

Posted 15 November 2012 - 11:24 AM

I have also had physical improvements on xyrem, like noticed that cuts heal faster! I bruise less easily as well. Getting decent sleep is pretty amazing and can do wonders for how your body functions.


Same here! And my dry skin is much better!

#10 trying_to_cope

trying_to_cope

    Member

  • Members
  • 17 posts

Posted 20 November 2012 - 10:22 PM

Same here! And my dry skin is much better!


I too have a diagnosis of narcolepsy AND hypothyroidism. Hearing you guys say that you have problems being cold all the time, while Im sorry for you guys as well, it makes me happy to see. All the time Im swearing to everyone, even my PCP, that something is wrong with my thyroid levels there has to be because I am freezing all the time. Just like Ciraeyna said my bones hurt inside and I don't even want to move because of the aching discomfort and I have no tolerance to the cold either. When I read that taking Xyrem helped you and made these things go away I started to cry just because of the slight hope that maybe with that same medicine I will feel better too. I have been so hopeless for soo long, reading that seriously made me feel better. I wish it was daytime because I'm calling my doctor tomorrow. I know everyones different and everyone responds different to meds but even the fact that it MIGHT help me gives me a sense of hope and to just keep hanging in there. Thank you sooo much :)